Guising

I loved Halloween as a child. We'd get dressed up and go round the doors, we called it 'guising'. We'd come back with polythene bags full of apples and oranges and swedgers (sweets) and nuts, and if we were lucky,  a coin or two. We'd keep the bags under our beds 'til the apples started to rot. I remember going to a neighbour's house with my brothers and the grandad was there, our chemistry teacher, and I sang 'The Happy Wanderer', (we called  it 'A Knapsack on my Back'). I still blush, I was/am such a crap singer. And I didn't know then it was religious (God is in the last line, don't think we ever got that far).

Collapse of Scottish Cross Party Group on ME

Very disappointed to see that the Scottish Cross Party Group on ME is no more.  I attended an event in May at the Scottish Parliament.

It is so, so, so vexing to see that thirty years on from my own diagnosis that the conflation with 'fatiguing illnesses' goes on, undermining patients with this catastrophic neuro-immune illness. I blame those medics who enabled the conflation to occur in the first place. I strongly believe that if Simon Wessely had not involved himself in ME, the landscape today would be much less divisive, though we may still not have all the answers.

Politicians are, sadly, not being adequately educated. It would seem that unless you actually suffer from neurological ME, or care for someone, you simply CANNOT understand why it is so damaging to mix ME with CFS and shove it under the disastrous umbrella of fatiguing illnesses. I am so sick of it all. These 'CFS' scientists have offered me, and countless others, NOTHING to alleviate our symptoms  - or cure us - and  have only squandered precious resources on psychosocial therapies (that are entirely useless and harmful if you have ME).

I'd also like to quote from a source I respect very much:  "The issue at the heart of this impasse is one of definition and compromise, and the very great harm that can result, and - as can be seen in England – that has resulted from bargaining away classic ME as a distinct organic neurological disease, in favour of the umbrella term ME-CFS..."

'Bargaining away classic ME' is a perfect description of what has gone on.

And I know, know, know that people with ME are often mislabelled with CFS and vice versa.  I am not criticising those with a CFS diagnosis (often PWME are accused of such), that would be ridiculous. I am criticising a status quo that has enabled the diagnoses to be fudged, perpetuating obfuscation and chaos, and watering down of a neuroimmune illness.

And people are often misdiagnosed with ME, full stop!

I often ask myself, why is it that ME patients don't - understandably - want to be conflated with CFS patients, but CFS patients don't seem to mind at all being lumped in with ME patients? I would be delighted if graded exercise and CBT could make me better (as Simon Wessely claims), and I would  definitely not want to have a more difficult illness to treat. The ME-CFS partnership benefits no one.

I'm closing off comments here - I really have no energy or desire for further commentary, I just wanted to highlight the sad SCPG situation -  and encourage people instead to comment on the ME Association thread if they wish (I have a couple comments up). I am just glad that people with ME in Scotland have, perhaps, been saved from the mirroring of chronic fatigue centres that exist in England*.

*update. Since writing this, a CFS fatigue clinic has opened in Edinburgh.

Junot Díaz on writing

I came across this interview with writer Junot Díaz a while ago and am only getting round to reading it. I love what he has to say:

While a short story cannot build the same kind of relationship with a reader that the novel can, the short story can far more convincingly remind the reader of life’s cruel brevity and of how irrevocable some of the shit we decide and that happens to us can be.

And this:

Each narrative mode has its benefits and its dangers. Third person, for example, runs the risk always of being dreadfully etiolated and sounding like it’s been dipped for a decade in an acid bath made up of the pulped voices of 1,001 old dead white males. Third person runs the risk always of being something that doesn’t dance. And first person clearly is always in danger of becoming a narcissistic pinhole, an all-or-nothing bargain. But again, I don’t think one writer’s preference says much about what is possible in the form.

Thirty years ago...

Came across the orange carte de séjour from my year abroad, October 1982, the year that turned out to be the year(s) from hell when I got Coxsackie, then ME. 

It makes me think of this wee snippet from The State of Me:

We had to register at la préfecture and get ID cards. Le préfet was like a Peter Sellers character. He glared at us while he stamped our cartes de séjour with a hundred different stamps. We started to giggle and he glimmered us a smile. 

Jim'll Fix It

Watching last night's Panorama, What the BBC Knew, in which the BBC investigates itself,  I was  reminded of how deeply we were all anaesthetised - for want of a better word -  in the seventies and eighties about the reality of who Jimmy Savile was: he was avuncular and eccentric, he was a good man; he was up there with Blue Peter and John Craven's Newsround, part of the safe furniture of childhood. My wee aunt with Down's Syndrome, a couple of years older than me, used to love him and I can see her vividly, grinning and giggling, her blue trousers, legs crossed, sitting on the floor watching Jim'll Fix It.

Last night showed a clip of Jim giving out medals to some cub scouts, instead of individual medals they got one big joint one, and he looped the medal strap round all of their necks. At the time, this would have been seen by us as playful and affectionate - watching now it's like he was putting a noose around their necks.

I reference Jimmy in my novel, my very ill character Helen wants Jim to fix it for her to be better. It's 1984. It feels odd  to re-read these words now.

At the weekends, I would sit clamped against the radiator or lie on the couch while Sean and his friends watched videos. Sometimes Ivan was there. The highlight of Saturday was watching Blind Date. I would fantasise about being chosen and worried sick about being sent on a date where you had to walk a lot. Sean said I should write to Jimmy Savile: Dear Jim, Please can you fix it for me to be healthy? I’m twenty-one and live in Scotland. I could see myself sitting in the television studio, with the medal round my neck, grinning idiotically at the audience. Rita and Nab would run on with tears in their eyes, thanking Jim for the miracle.

The  current disturbing BBC calamities aside, like so many, I cannot understand how others 'knew' of Jimmy Savile's crimes, but remained silent over the decades. Different culture back then or not I just don't get it.

Mona Siddiqui on Desert Island Discs

Very listenable, academic Mona Siddiqui on Desert Island Discs yesterday. I love that her luxury item would be tea. And I had not heard of Jagjit Singh.

Lovely jubbly, real science not pretend

From Invest in ME Journal,  volume 6, issue 1, June 2012, pg 28:

A compilation of documented immune system abnormalities in ME/CFS from 1983-2011

A lovely list of findings, this the first:

 1983

“Our research and that of others working in collaboration with us has shown conclusively that post-viral fatigue state, i.e. myalgic encephalomyelitis, has an undisputed organic basis….We were also able to show by looking at receptors on lymphocytes i.e. markers on white blood cells, that there was an increased association of patients with the disease with one particular type of marker. This type of marker is usually found in patients with immunological abnormalities of a particular type. We furthermore were able to demonstrate that there was impaired regulation of the immune system in patients with the disease, both in the acute and chronic stage...we did this serially on several occasions and the abnormality persisted. The abnormality was...of the sort that is found with persistent virus infection. A number of other subtle but definite immunological abnormalities were found and described that…are of the type found in association with disorganised immunoregulation. This meeting at Cambridge showed that using…advanced immunological tests…that patients with myalgic encephalomyelitis had definite proven abnormalities of a specific type” (Dr - later, Professor  Peter Behan - consultant neurologist. Symposium on ME, Cambridge, September 1983).

This of note as I was diagnosed by Dr Behan in 1983/84, long before Simon Wessely had started his absurd campaign of denial.

A wee thrill

Congratulations to the winners of Bridport Prize(s) 2012, the results were officially announced this weekend! I was delighted to be on the Flash Fiction shortlist and just saw my name is first on the list - which denotes nothing, purely random! -  but it gives a wee childlike thrill. The Bridport website was revamped earlier in the year and it looks fantastic.

Memory & writing & too many selves

Many years ago I got a copy of Therapeutic Dimensions of Autobiography in Creative Writing by Celia Hunt. I only ever dipped in but highlighted some paragraphs here and there. The other day I came across this: 'As Ulric Neisser says, autobiographical remembering is a complex, many-layered procedure that involves:

1.    actual past events and the historical self who participated in them;

2.   those events as they were then experienced, including the individual’s own perceived self at the time;

3.   the remembering self, that is, the individual in the act of recalling those events on some later occasion; and 4. the remembered self constructed on that occasion.

This means that: ‘The self that is remembered today is not the historical self of yesterday, but only a reconstructed version’, a mixture of fact and fiction, or even on occasion a complete fiction of our imagination.’

It hurts your head to think of all these selves, interesting as the observations are, better not to dwell, I think.  Just write.

When

When someone who knows little about the illness reads my novel and enjoys the story *and* learns - and gives 5 stars - I am very happy. A lovely wee Goodreads review. Thank you, Björn.

Always too many on the shelves

There are always books you can give to charity, always too many on your shelves, even when you have given away as many as you can bear. I almost donated George Simenon's La Verité sur Bébé Donge a few weeks ago but when I opened it I realised it was my French prize in fifth year at high school so, of course,  I can't release it. Why we keep these things I do not know. I doubt I'll read it again and it will  continue to gather dust.  I can't release The Lord of the Rings either, that was my Maths Prize.  I've never read it, and I probably won't - though we had to do The Hobbit in English, that's probably why I chose it in the first place. (I  haven't seen any of the hobbit films, but I do remember Bilbo Baggins' name, it's intriguing what stays in your head from books you read years ago.) I'm also quite tempted to give away Doris Lessing's Briefing for a Descent into Hell, I don't think I ever got through it, but it's signed so I can't. I must've seen her at Edinburgh Book Festival but  don't remember when.

A sight for sore eyes

Am boring myself rigid with all this ME talk last few days, I'd much rather talk about books and writing, and not be in tears, but the quackery and fuckery MUST be challenged, so that we can have peace to live our lives. Really. And this is just too gorgeous not to post: 

Myalgic Encephalomyelitis: International Consensus Primer for Medical Practitioners 2012

A wee snippet:

Problem
The label ‘chronic fatigue syndrome’ (CFS), coined in the 1980s, has persisted due to lack of knowledge of its etiologic agents and pathophysiology. Misperceptions have arisen because the name ‘CFS’ and its hybrids ME/CFS, CFS/ME and CFS/CF have been used for widely diverse conditions. Patient sets can include those who are seriously ill with ME, many bedridden and unable to care for themselves, to those who have general fatigue or, under the Reeves criteria, patients are not required to have any physical symptoms. There is a poignant need to untangle the web of confusion caused by mixing diverse and often overly inclusive patient populations in one heterogeneous, multi-rubric pot called ‘chronic fatigue syndrome’. We believe this is the foremost cause of diluted and inconsistent research findings, which hinders progress, fosters scepticism, and wastes limited research monies.
 
Solution
Myalgic encephalomyelitis, a name that originated in the 1950s, is the most accurate and appropriate name because it reflects the underlying multi-system pathophysiology of the disease. Our panel strongly recommends that only the name ‘myalgic encephalomyelitis’ be used to identify patients meeting the ICC because a distinctive disease entity should have one name. Patients diagnosed using broader or other criteria for CFS or its hybrids (Oxford, Reeves, London, Fukuda, CCC, etc.) should be reassessed with the ICC. Those who fulfill the criteria have ME; those who do not would remain in the more encompassing CFS classification.

See how much progress scientists and doctors can make when the lunatic fringes - yes, it's unpleasant to be unfairly labelled, isn't it? - Wesselyites, be they doctors, journalists, or members of the public who swallow any narrative presented in a newspaper article - stay the hell out of it!

The Primer link is really worth looking at, it is easy to read, lovely colours, not drab and clinical. It explains why everyone gets so upset.

Thank you.


* And a lovely new review of The State of Me. I like that Katie recognises the writing of  it half killed me. I'm not sure that everyone does.

Sticks and stones

It is, naturally, best to ignore this kind of thing: manipulative half-truths - the second instalment - from media psychiatrist Max Pemberton (Max claims to have followed the medical literature on ME for years -  maybe he means those papers authored by consultant psychiatrist Simon Wessely, for he certainly hasn't learned much); and this a - deliberately inflammatory - piece from Max's friend, a Telegraph journalist I'd never heard of. Wessely's influence is, of course, waning drastically, so Max has to come up with spasms of sensationalism, lest we all forget that people with ME are militants, armed and dangerous, though he stresses - Max really cares about ME sufferers, you know - it's 'a very small minority'. Yet, he still feels the need to write a whole column about it, again, and is still, perplexingly, banging on about ME and its 'psychological component'.

First instalment is here, where Max informed us with not a trace of irony that 'it wasn't until psychiatrists such as Professer Wessely started treating the condition psychologically that real progess was made'. And they wonder why people with ME get upset! (You would think as psychiatrists they would understand that denying a patent's reality for years and years and years is not often met with joy and love.) I would say that the only 'psychological component' of ME is the constant misrepresentation and undermining of patients by this core of psychiatrists.

Let's revisit Professor Malcolm Hooper's words from last year, when 'The Threats' saga was in full swing: No right-minded person could condone any campaign of vilification against scientists (“Chronic fatigue syndrome researchers face death threats from militants”; The Observer, Sunday 21st August 2011); equally, no right-minded person could condone what psychiatrists such as Professor Wessely have done to the UK ME community for the last 25 years. 

This weekend, I realised that I've been ill for thirty years, almost exactly to the day. Max apparently hasn't heard of Coxsackie B4, or read Dr Melvin Ramsay's book, but there was an outbreak in the west of Scotland in eighties. I must've picked up the virus before going off to France for my university year abroad, I'd worked as a waitress that summer, maybe that's where I got it, I'll never know. I was  forced back home from France, six weeks later. I remember like yesterday the catastrophe of having an illness I'd never heard of punch into my life, and my family's life. I remember the trailing back and forth to the Southern General neurology clinic, where  ME was eventually diagnosed, feeling as if I were dying. I remember the peeling orange chairs. I remember the bag of plasma on my lap, as I waited in a wheelchair to be taken back to the ward. I had a plasma exchange and immunosuppression as one of my first treatments, albeit experimental. The woman in the bed next to me had myasthenia gravis.

It is therefore doubly upsetting to see the toxic comments that are still out there - resplendent like  bunting - for people with my illness.  You'll find obnoxious, uninformed twonks on virtually any online discussion thread, it goes with the territory. But I find the ME ones to be dazzlingly spiteful.

In the Telegraph thread, I saw ME referred to as 'lazy cow syndrome' (LCS). Sufferers referred to as 'fruit loops' and 'rent-a-mob'. I was told I had 'a supposed disease', and someone else said I wasn't 'a viable source' of information on ME (whereas Jeremy Kyle fan Max Pemberton is). It is so very dispiriting - once again - to see how the distorted narrative of this illness has been so easily swallowed by (apparently) intelligent people, people who have no clue about the history of the prejudice we have faced. People with no curiosity about the truth, just a propensity for being glibly cruel.

I was particularly jabbed by  a tweet from some Canadian editor: They're just as eager to have a neurological illness as multiple sclerosis sufferers are not to have one!

Ha ha, that's so fucking funny! I bet all his followers fell of their chairs laughing. But he - like the others - can say this with impunity, and he may even be applauded. You can mock people with my illness and it's fine and dandy, we are a fair target, you see.

He obviously hasn't heard of the Canadian Clinical Guidelines.

Or the International Consensus Criteria 2011 ('Myalgic encephalomyelitis is an acquired neurological disease with complex global dysfunctions').

But then neither has Max.

It is, of course, the hijacking and redefining of a neuroimmune illness by UK psychiatrists since early 90s that has given anyone and everyone a free pass to this kind of casual abuse of people with ME. It is nothing less than verbal thuggery. And it is unacceptable. No other patient group in the world would be expected to take this. But they are clever, the biopsychosocial brigade (or medical mafia as my mother calls them). They have distorted the narrative so much that you can't now defend yourself without being labelled an 'armed militant'  or 'paranoid obsessive' (the latter from another charming Canadian tweeter). 

These people who indulge in detrimental, offensive commentary online aren't important and would be full of shame - I hope - if they actually understood what they were saying, but it is soul-destroying when you read them. Soul-destroying that such wilful ignorance remains. The childhood refrain, Sticks and stones will break my bones but names will never hurt me, has been going through my head,  and I am trying today to live by it - perhaps a child-like impulse.

MEActionUK penned a fine response to the Telegraph but it will doubtlessly not be published, because it contains truth, and the media is not too fond of accuracy when it comes to this illness. Health editors, indeed a fair few UK editors,  have been complicit in sustaining  the half-truths of this ME medical mafia.

I console myself a little that the MRC is finally  - not before time - funding much needed biomedical research, but this weekend it felt like we were living in a cave. And I am just so glad - though sad that I've been ill for so long - that I ended up in the safe hands of a neurologist. These ME psychs truly frighten me.

*I forgot to include this: Max's journalist friend refers to Showalter's 'brave and brilliant' book 'Hystories' (really, you couldn't make it up, brave and brilliant). It's unlikely he's actually read it, it came out in 1997 and is old news. It seemed to me more likely he'd been advised: Mention Elaine Showalter that'll really get them going, show them to be the rabid militants they are! My main thought was, Has Elaine not been abucted by aliens yet? One can only wish.

** One last thing: if I were mentally ill I'd happily be referred to a psychiatrist, but I'm not, so I prefer to stick with neurologists, virologists, immunologists, etc  the people who may  actually be able to help me.

*** An interesting overview of the ME situation from Valerie Eliot Smith, with links to current research. Well-written, calm post, though I think Valerie is a little too gentle on the psychs.